Adaptation and Linguistic Validation of Angioedema PROMs in Latvian for Assessing Recurrent Angioedema

TL;DR

This study translated and validated angioedema questionnaires into Latvian to assess disease activity, control, and quality of life in patients with different types of angioedema.

Contribution

The study provides a linguistically validated Latvian version of AE PROMs and identifies five distinct quality of life domains.

Findings

The Latvian version of AE-QoL identified five distinct domains compared to four in the original version.

Strong correlations were found between AE-QoL scores and both AAS and AECT, showing the impact of disease activity and control on quality of life.

Significant gender differences were observed in AECT and AE-QoL scores, indicating the influence of gender on disease perception and quality of life.

Abstract

Background: Angioedema (AE) is a localized, non-pitting swelling affecting subcutaneous and/or submucosal tissues. Despite varying underlying mechanisms, AE significantly impacts patients’ quality of life (QoL), which is closely linked to disease activity and control. Objectives: This study aimed to translate and linguistically validate the angioedema activity score (AAS), angioedema control test (AECT), and angioedema quality of life (AE-QoL) questionnaires into Latvian, and to use these validated tools to assess disease activity, control, and quality of life within the study population. Methods: PROMs, including the AECT, AAS, and AE-QoL, underwent a standardized linguistic validation process. Patients with hereditary angioedema (HAE), mast cell-mediated angioedema (AE-MC), and angioedema of unknown origin (AE-UNK) were recruited from two separate studies conducted at Riga Stradiņš University. Results: We enrolled 41 participants (90.2% women) with a mean age of 46.3 years. AE-MC was the most common (63.4%), followed by HAE (19.5%) and AE-UNK (17.1%). The mean AAS score was 15.8, with no significant differences regarding AE type, gender, or age. The mean AECT score was 8.29, revealing significant gender differences (women: 7, men: 13.5). The AE-QoL total score was 45.5, with significant gender differences in most domains. Strong correlations were found between AE-QoL scores and both AAS and AECT, highlighting the impact of both disease activity and control on QoL. Conclusions: The Latvian adaptation of the AAS, AECT, and AE-QoL questionnaires effectively assesses AE activity, control, and disease-related QoL. Our study reveals poor disease control, underscoring the need for tailored interventions and regular PROM evaluations, with the Latvian version of the AE-QoL questionnaire identifying five distinct domains compared to four in the original version.